The Slim Chance of a Miracle

Posted on Posted in Hydrocephalus, Neural Tube Defects

By Lena

The slim chance of a miracle
It was very difficult for me to accept the truth, that Julian was not going to be able to live a good life.

When I first found out I was pregnant, I was scared and confused. But after a lot of thought, the idea of a baby was wonderful. Before long I was swimming in books, magazines and web sites about babies, parenting and pregnancy.

At 16 weeks, my quad screen test results came back indicating abnormalities. An ultrasound determined the baby was a boy, and I immediately named him Julian. That ultrasound also determined that he had a severe case of hydrocephalus.

My reaction was disbelief. I had to get a second second opinion. I made an appointment with one of the best known maternal fetal medicine specialists in the state, and was told the same thing. That still wasn’t good enough. I got yet another medical opinion, and had several more tests. All to be told the same thing: Julian’s condition was not good.

Julian’s hydrocephalus was an unusual case because it was asymmetrical and growing rapidly. It was very difficult for me to accept the truth, that my son was not going to be able to live a good life. If he survived, he would undergo multiple surgeries throughout his life, and possibly not be able to eat, speak, walk or love. I feel strongly that that is not a good way to live for anyone, let alone a little child. For my child.

I was scared to death. After a month of pure agony, I made the toughest decision I have ever had to make.

While I was researching and struggling to make my decision, I came to an important realization: There are many organizations and associations that offer wonderful support systems for children with severe disabilities. But really digging in into it, beyond the miraculous stories that get all the press, it became apparent that the miracle stories only happen a small percentage of the time. If it was common, they wouldn’t be called miracles. The majority don’t seem nearly so lucky. I thought really hard about the narrow chance that my own child would defy every odd and become on of the miracle children. I decided to go with the doctors’ directions, and trust them on this one rather than leave my child’s fate to the slim chance of a miracle.

Now, Julian is in heaven. I hope someday I will be able to meet him face to face. I love him so much. He went from one peaceful place to another. I will always love him and think of him as my first child. May he rest in peace.

I am so relieved that this support system is in place, as it helped me tremendously with my decision to end my pregnancy.

photo credit: Spruce Run (2) via photopin (license)